Pages

Friday, August 31, 2012

The super-protein filaggrin helps skin cells take their proper shape as they develop into the upper, outer layer of skin; in its last step, it disintegrates into molecules that help the skin lock in moisture. Back in 2006 a landmark discovery showed that mutations in the filaggrin gene made it likely that the gene’s owner would develop eczema. But even though filaggrin is the poster child for eczema genetics, not that many eczema patients—only about 15%—have mutated copies of the gene.

Now researchers led by David Margolis, a professor of dermatology at the University of Pennsylvania, have shown that, among children with eczema, those who have filaggrin mutations are more likely to experience persistent eczema symptoms than those who do not.

The scientists analyzed data from the Pediatric Eczema Elective Registry (PEER), an ongoing 10-year registry maintained by Novartis to monitor the long-term safety of using pimecrolimus 1% cream. The new results are in press at the Journal of Allergy and Clinical Immunology.

The difference is subtle: at any time up to about four
years of follow up (the period covered by the study), a child with a
filaggrin mutation and a history of eczema is roughly 50% less
likely to have clear skin than a child with two good copies of
filaggrin. [Thanks to Margolis for helping me understand odds ratio.]

Interestingly, the authors noted that although all the mutations they studied were “null” mutations—that is, if you have one of these mutations, that copy of filaggrin doesn’t get produced at all—children with different mutations responded differently to treatment with topical steroids. Kids with the most common mutation, R501X, were most likely to need to use steroids to clear their skin. The authors don’t have an answer why this might be so.

Thursday, August 30, 2012

It’s rare that my own skin deviates from its usual dryness and sporadic eczema flares. But right now, if I look at things from a detached perspective, things are interesting.

By any measure my skin’s been terrible since I left for vacation with the family. The return trip, which involved a 17-hour moisturizer-free delay in Newark, did me no favors. My scalp is a disaster. And since I got back I have had two weird episodes where my face and torso have gotten all puffy, tight, and red.

Last weekend we spent Saturday night on my kids’ preschool campout. I woke up Sunday with a red face and a weird crusty oozing above both eyelids.

Maybe I brought this on by standing next to the campfire. Maybe it's a reaction to pollen. All I know is that I had to grit my teeth and get through the morning until I could have a shower and moisturize at home. I took an Allegra. I felt pretty shitty.

I even thought I was going to miss work on Monday. But Monday morning my skin had calmed down enough for me to go in.

Then, after I went swimming on Wednesday, a co-worker asked if anything was wrong. “Your face is all red,” she said. It was starting up again. Even my wife, who is quite the diplomat, was looking at me strangely in the evening.

So today I had an appointment with the doctor. He doesn’t know what’s going on, and I don’t think he even expects to find out, but he mumbled something about oedemic urticaria and gave me a shot of prednisone in the butt. Also at some point soon I need to go in for a blood test to see if I have a “complement deficiency"—something wrong with a particular arm of my immune system. But, as with most aspects of eczema, I expect it will remain a mystery.

Wednesday, August 22, 2012

Nobody likes flying these days. The bag fees, the lines, the security, the delays. But flying is a special hell for those of us with eczema. Each of us has his or her personal pharmacy at home, containing moisturizers, various grades of steroids, and special soaps, shampoos, and shaving creams that cost a lot of money and are difficult to find in stores. When you travel, first of all you have to select what to take with you. Airlines lose bags, so you want to put your vitals in your carryon—but regulations now say that everything has to fit into a quart-size Ziploc, so you have to fill small plastic containers with a few days’ worth of this or that. And if you’re not careful—as happened to me recently—a zealous airline employee can “gate-check” your carryon because the plane’s already full of other passengers’ necessities. You last see your precious mini-pharmacy sitting forlornly on the jet way as you board Untied Airlines 1234 for Topeka.

Untied Airlines. (I don’t want to embarrass the airline, so I’ve given them a pseudonym.)

I’ll never fly Untied again. They made my trip back from my summer family vacation a personal indignity. The worst thing is that it wasn’t the Untied staff, who were almost all truly helpful and pleasant. It was the airline’s system, which was clearly to blame for all the problems. So no free vouchers or drinks will convince me to fly with them again, because the experience would surely be no better next time.

Our trips out and back were two-stage: San Francisco to Chicago to Halifax, and Halifax to Newark to San Francisco. On the way out, both flights were delayed by two hours—but the delays were of the rolling variety, in which the airline tells you the plane’s going to take off in half an hour, but it doesn’t; then they announce it will take off in another half hour, but it doesn’t; etc.

But these delays were peanuts. The real trouble started on the second leg of our return, as you will see.

My mistake was in bringing along on the trip only just enough moisturizers and steroids to last the planned duration. Because the vacation was stressful (my extended family, ten of us, in a small house for two weeks) and heavily air-conditioned, my skin had been especially dry and inflamed—so much so that my dad assumed the redness was sunburn. I ran out of Eucerin two days before our return, and bought a cheap substitute that didn’t really do the job. I squeezed the last microgram of steroids out of a flattened tube, and willed myself not to scratch. You can imagine how that worked out.

I packed my pathetic remaining moisturizer into a small Tupperware container and shoved it into my carryon. As we left Halifax for San Francisco, where my eczema stash awaited, I felt like a nomad in the desert making his way back to a beloved oasis.

We barely made a tight connection in Newark. An Untied employee gate-checked my bag, and I watched my moisturizer disappear into the distance. Untied gave us seats in four different locations throughout the plane, so we had to beg random strangers to let us sit next to our kids. It was 2:00 in the afternoon.

Two hours pass on the tarmac. Then the pilot tells us the flight has been canceled because of mechanical difficulties.

We disembark in confusion. Eventually we get booked on a flight leaving at 8:00 pm. We get food vouchers and search the airport for something that my daughter, who has dairy and nut allergies, can eat. We find essentially nothing. (She doesn’t have known anaphylactic problems, but who wants to gamble?) She's eaten all her snacks already. This is going to be a hungry day for her. We board at 8:00 and, because we have seats in four different locations, beg random strangers to take our cramped middle seats so that we can sit next to our kids.

Three hours pass on the tarmac. The kids fall asleep. Then the pilot tells us the flight has been canceled because of mechanical difficulties.

Someone in the back of the plane yells “Goddamn!”

We all get free drink vouchers and coupons for 10% off our next flight on Untied.

And we get to stay overnight at the Newark Ramada. “Overnight” in this case means four hours, since it’s now midnight and we have to be back at the airport to go through security again for our new 7:00 am flight.

By the morning, my skin is so dry it makes the Dead Sea Scrolls look supple. I introduce myself to my seatmate, but can’t shake hands with her because it would be too painful and disgusting. I look at myself in the mirror of the airplane bathroom. My face is falling off.

Eighteen hours after we were supposed to arrive, we land in San Francisco. The final farce: our bags aren’t on the plane and we have to go searching for them. My wife finds them in a special long-term holding location.

The first thing I do at home is to take a long shower with Dove soap and tar shampoo and cover myself in a thick layer of Eucerin. The second thing: rip all the Untied tags off our baggage.

The moral to this story, I guess, is that you have to plan for the worst when you fly. And I will next time. You have to go into survival mode, and make absolutely sure that you have small containers of your eczema essentials on your person where you can’t possibly lose them. Otherwise, you run the risk of a hellish experience.

Friday, August 3, 2012

In its current issue, Consumer Reports has a story titled “10 surprising dangers of vitamins and supplements” with the subheading “Don't assume they're safe because they're 'all natural'.” Good reading--I know a lot of people take various supplements in the belief that they will help with eczema.

If you’re a reasonable person, there’s nothing to worry about. A few points jumped out at me though.

Dietary supplements can be “spiked with prescription drugs” which can cause side effects and interactions that many people are buying supplements to avoid.

You need to be careful when buying herbal therapies—CR’s reporter went to a number of traditional Hispanic herbaries and “none [of the “healers”] volunteered relevant facts about possible side effects or the risky interactions that can occur when an herb is taken with a medication.” This would also be true for traditional Chinese medicine, I expect.

And it’s possible to overdose on vitamins. For patients with eczema, vitamin D is the current fad, and I have heard of people taking regular megadoses—way over the recommended limit. The thing is, just because the recommended limit is 4000 IU (whatever an IU is) doesn’t mean that you can take a supplement of 4000 IU. You have to consider all the sources you’re getting vitamin D from, including fortified dairy and sunlight. CR describes, for calcium, how it’s surprisingly easy to go over the limit.

I’m on vacation for the next two weeks. So I won’t be posting until late August. Currently I’m stressing about packing all the moisturizers, steroids, shampoo etc. that I need and won’t be able to get at my destination. And cursing the TSA regulations and all the terrorists who’ve made it impossible to bring my “toiletries” in my carry-on bag. Up yours, Al Qaeda! May you be cursed with eczema and enjoy a thousand itch-filled nights.